Tag: Survivorship

I apologize for not posting anything of substance this week. As some of you already know, I have been struggling with a fever since Sunday. When I am feeling better, I will update you on our visit to Boston and the treatment plan. Until then, please send light, love and healing thoughts.

I am writing this blogpost from the comfort of our own apartment. Sunlight is streaming through the glass, front door and the washing machine is humming in the background. I am surrounded by familiar landmarks—photographs, giant coffee mugs, and piles and piles of both read and unread books.

This feels normal.

This feels good.

If I weren’t bundled up in a sweater and layer of blankets, if I wasn’t fighting nausea, if I wasn’t struggling for control of my left leg, I could almost forget that I have cancer. I could almost forget that I have to return to the outpatient cancer clinic tomorrow for still more chemotherapy.

Almost.

The gravity of the situation sneaks up on me, Dear Readers. It surfaces when I least expect it to, knocking the air out of my lungs. It makes me cry—almost daily—and always in the evenings when the punch of the steroids begins to fade and the exhaustion creeps in. It tries to steal the joy still inherent in my days…but I won’t let it win.

Not today.

Not tomorrow.

Not ever.

As difficult as my current circumstances are, there is still so much to be thankful for. There are blessings hidden in each hour. Every new day that I wake up to is an opportunity for grace and gratitude. AND that is what I will focus on—not on the future, not on whether or not this treatment plan is going to work in the long-term—but on the good that each moment holds.

Will it be easy? No. Absolutely not. I am going to have emotional meltdowns and days that I can’t leave my bed. Tears will be shed. Sobs will be stifled by pillows. It is in these moments that I will remind myself that life still has beauty and that no matter how difficult this journey is, it is worth it.

Tomorrow, I return to the Hematology/Oncology Outpatient Clinic for two different chemotherapies; one will be administered through my Ommaya Reservoir (my off-centered unicorn horn) while the other will be infused through my chest port. On Tuesday, I will take my last mega dose of steroids (yay!). On Thursday, providing my white blood cell count is high enough, I will receive another dose of chemotherapy through the Ommaya as well as undergo a bone marrow biopsy. The results of that biopsy will shape next week’s treatment plan.

On April 3rd, my significant other and I will travel to Boston for the initial bone marrow transplant and tissue-typing consult.

I will need your continued support, Dear Readers, through all of this. I will need your prayers. I will need all the light and love that you can spare. I will do my best to keep you up-to-date, but please know that if you don’t hear from me, I am undoubtedly thinking about you and continuing to count YOU as a blessing.

The ride from the hospital to the American Cancer Society’s Hope Lodge is a short one…but I cried big, chemo-y, alligator tears the entire way there. I shed still more happy tears yesterday, while simply sitting in the truck and listening to the radio. I’ll probably keep on crying—because my heart is that full of gratitude.

There was a part of me, Dear Readers, that believed that I was never going to see the outside world again. I was terrified that hospital pumps and the ding of call bells was all that the future would hold for me.

Thank God I was wrong.

Thank God for the excellent team that cared for me while I was inpatient on Shep 4 (the Hematology/Oncology Cancer Floor).

Thank God for YOU, Dear Readers, and all of the prayers and well-wishes that you have shared with me. You truly have been spoon-feeding the strength that I need for this fight. You are carrying us through this storm, one step, one comment, one prayer at a time. NONE of this would be possible without your words of encouragement, without your continued love.

I wish that there were other words that I could share with you—words that could somehow capture the essence of what I am feeling. “Thank you” does not suffice. “This means the world to us” is not enough. In truth, my entire being is overwhelmed with gratitude. Even as the chemotherapy knocks my blood counts down, my veins are full, singing with excitement. My heart is lighter than it has been in weeks. I am so incredibly blessed.

Waking up in the same room as my significant other? A blessing.

Having breakfast with him, in the Hope Lodge’s dining room? A blessing.

Watching him fall asleep in a recliner while I write this? A blessing.

Hope Lodge is the house that saw so much of my first treatment—seven, intense months of it to be exact—and while I never thought that I would be back here, head shaved, port in my chest, doing this again, I am grateful to be here. I feel as though I could press a hand against the wood molding around our door, and all of the peace and healing this home has to offer would somehow sink into me, somehow bolster my resolve to keep moving forward. I look out the window and I see a hill of snow and a set of steps that, even with my left leg brace on, I conquered just this morning. I look at the artwork adorning the walls, and I see more than color and shapes—I see life.

I see life, Dear Readers.

I am not sure that I will ever feel strong enough for this fight, but days like today—I feel gratitude. I feel God’s grace. I feel hope, sending out new roots.

Please continue to send love and light. Although I will be in the capable hands of my outpatient Hematology/Oncology team, tomorrow will bring with it another round of chemotherapy. Pray that it works. Pray that we send this cancer packing once and for all.

I slept through most of Blizzard Stella. As the storm’s fluffy snowflakes began to drift earthward, I let the pre-medications and chemotherapy take me away. I burrowed underneath my hospital blankets while my significant other stretched out in the recliner beside my bed. I closed my eyes, falling asleep to the sound of his breathing.

I’ve missed the sound of him sleeping.

Maybe that’s a strange thing to say or to miss…but I do. I miss the comfort of each inhalation and exhalation. I miss walking into our apartment living room, to find him sprawled out on the couch, mouth wide open, reddish hair sticking up in every possible direction.

I am homesick this morning, Dear Readers—for all of the little things that make our life beautiful. I miss the sound of Wallace the Wonderful and Alderaan charging through the living room on the way to their food dishes. I miss the squeal of the tea kettle and the giant mug in the cupboard that reads, “I Freaking Love You”. I miss the scent of our laundry detergent. I miss the taste of chocolate chia pudding (with a dash of cayenne and cinnamon in it).

I miss my clothes.

I miss feeling comfortable in my own my body—the body that didn’t have a 24/7 accessed chest port or an off-centered unicorn horn sticking out of her head.

I miss my life.

Most days, I try not to think about home. I try not to think about the future at all. Yet, here I am, pinning for the comfort of a thick sweater and the orange glow of the Himalayan Salt Lamp in our bedroom. I find myself wondering if my immune system will allow us to fill our screened-in porch with flowers again or if I’ll even be able to sit outside in the sun, sans mask, to write.

It’s the little things that make a life wonderful…and it’s all the little things that I am missing today.

If I am being honest, Dear Readers, I know why this is happening. We received good news yesterday—the tumor is shrinking! Treatment is working! My oncologist is reaching back out to his colleagues in Boston (where I will eventually be transferred) and additional plans for my ongoing treatment will be made. And, while I am beyond relieved and grateful for these positive developments, it makes my status as a hospital inpatient a bit more difficult to bear. It makes the clock’s hands tick louder. It makes each infusion and injection feel a bit more important…because I want each subsequent treatment to work just as well as the preceding ones. I feel as though there is pressure building, an impatience for this cancer to be gone, because I want to be home. I want to be healthy. I want this chapter of my life to finally close and be behind me once and for all.

I don’t mean to sound like an ingrate. I know that this is the privilege of good medicine and responsive genes allowing me the luxury of homesickness. I know, that even in this sadness and discomfort, that I am profoundly blessed.

And, maybe that’s the lesson of this day: that gratitude and homesickness can hold hands. That having something to be grateful for, having hopes and dreams for the future wouldn’t be as sweet if not tempered by the prospect of loss. That, even amid our uglier emotions, there is an opportunity to cultivate still more gratitude and grace.

I hope this week has been kind to you, Dear Readers. I hope, that if you find yourself in a situation of mixed emotions, that you give yourself permission to feel or at least acknowledge the existence of both. Because we’re human, because we’re beautifully complex, because our emotions are a part of our experience here.

As always, thank you for your continued prayers, warm wishes and good thoughts. They are working! I can’t do this without you.

In the hours after my Ommaya Reservoir was surgically placed, I sobbed. A wave of grief and tears rushed at me, clinging to me as fiercely as the blood and the betadine that coated my scalp. I thought I had made peace with the fact that I would be a unicorn with an off-centered horn. I thought I was emotionally and mentally ready for this step.

It turns out that “ready” doesn’t exist.

“Ready” is the lie we tell ourselves in order to take the next, necessary step.

In the days after my Ommaya Reservoir was placed, I dry heaved. I slept a lot. I discovered that staring at screens for even short periods of time results in something akin to motion sickness. Writing this blogpost has been a form of medieval torture. Even reading is a hazardous pastime now. I have been told that these side-effects, so similar to those of having a concussion, should diminish with time. My brain and the Ommaya will eventually find some easy equilibrium. This—the pain, the slight swelling, the difficulty doing those things that usually nourish my soul—all of it is temporary.

And that, Dear Readers, is the mantra that carried me through the weekend: that this is temporary.

This discomfort is temporary.

This treatment, although a thousand times more arduous than my first cancer treatment, is temporary.

This cancer is temporary.

What do I mean by all that? Well, the first thing you should know is that at this hospital, Hematology/Oncology inpatients are visited daily by a team of attending physicians, fellows, medical students, and nurses. The faces comprising the team usually cycle out on a weekly basis. Team members also change every weekend (because even superheroes need days off). It was during this last weekend rotation, that the Hematologist/Oncologist that cared for me likened my cancer relapse to a temporary and oh-so-beautifully ordinary situation: that of a clogged sink.

At some unknown moment during the past few months, my bone marrow began to flow with cancer blasts, just as an open spigot would. Normally, leaving a faucet running might not be a problem, but sinks sometimes plug up. Sometimes, they stop draining altogether. My spinal cord, Dear Readers, stopped draining. It plugged up with a tumor. Water sloshed over the sink’s basin, spilling onto the floor in the form of pain, lost flexibility, impaired mobility.

Like any clogged sink, though, there are things that we can do to resolve the situation.

There are towels down on the floor, now, sopping up the spillage. Each injection of chemotherapy into my Ommaya Reservoir will clear still more of the tumor from my spinal cord, allowing the sink to drain down. Each dose of systemic chemotherapy administered through the power port in my chest will clean the cancer out of my bone marrow, shutting off the spigot’s flow.

Eventually the sink will drain.

Eventually it will dry out.

Eventually it will be ready for a bone marrow transplant.

So, yes, in the hours after my Ommaya Reservoir was placed, I sobbed. In the days after the surgery, I have struggled with nausea, fatigue and pain. But, eventually—in the weeks, in the months ahead—while shuffling one, unsteady foot in front of the other, I will regain some semblance of equilibrium. I will remind myself that “temporary” is, in actuality, a beautiful word. And, when I am too tired or in too much pain, I will simply close my eyes and conjure light. I will let it radiate within me, and out of me, flowing from the crown of my head like a unicorn’s silver and gold mane. I will let the love and strength you have gifted me, Dear Readers, gather in my newborn legs. I am, after all, a creature being remade.

I ask, once again, for you to send kind thoughts this upcoming week. Send light. Send love. Send strength.

This treatment plan is ugly, Dear Readers, and the days ahead of me are not easy ones. Now that the Ommaya Reservoir has been placed, the treatment regimen will intensify. I will be receiving harsher chemotherapies, nearly every day. This cancer will be shown no mercy…which means neither will I.

I can’t lie to you, Dear Readers. I just can’t. I was absolutely terrified of what Monday, March 6th, 2017 might bring. I was internally trembling at the idea of having yet another cervical injection of chemotherapy into the back of my neck. I was afraid of waking up on the table (again) with a needle lodged in my spinal cord, moaning. I was dreading the resulting headache and pain. The risks associated with the procedure kept running through my mind. I was worried, too, that the day’s treatment regimen of additional shots to my legs would make me nauseous. In short, I wasn’t sure how I was going to survive Monday.

And, yet, not only did I survive it…but Monday was a win.

It was an unexpected win to be sure, but it was a win because I have been blessed with an outstanding care team—everyone from my oncology nurses and doctors on the floor, to the Interventional Radiologists performing the cervical injection, to the volunteers and support staff that take the time each day to repair my fraying seams.

In many ways, I feel as though I am a tapestry being ripped out, woven back together. These repairs they’re making to me—they mean something. I am not sure what I will look like at the end of this process, or what image might emerge among the woven threads, but occasionally I catch a glimpse of it.

I see something vibrant, as red as the dye a dear friend used to color my hair with. It’s the shade of scarlet that my LNA’s used in the poster that they made for my room.

I feel a blanket of love, as bright as the rainbow of cards and well-wishes that flooded my bed yesterday afternoon.

I feel calm, in my mother’s warm embrace, in the way my partner holds my hand while we watch television at the end of the day.

Not every day will be like this past Monday. There will be more painful procedures to come. There will be nausea, fluctuations in weight, hair loss. There will be tears and heartache. Suffering is, after all, an inevitable part of this journey, of being human.

But there will also be wins. Small wins. Landslide wins. Wins that no matter what shape or size they arrive in, we have to seize with both hands—even if our finger strength is weak. Even if we need someone to help us hold on.

I hope, Dear Readers, that this week brings you some wins, too. I hope you feel loved and appreciated. I hope you know that, each day, your messages and prayers are giving me the strength to face this challenge with both grace and gratitude.

The sky, as seen from my hospital room window, is a beautiful blue today—the kind of blue that reminds me of summer evenings spent wading through dew-soaked grass in search of moths. It’s the same shade that occupies so much of my partner’s eyes. It’s the type of blue that whispers of happiness, of hope.

Today was better, Dear Readers. It consisted of a heaping helping of steroids, multiple doctors’ visits, and long-talks with social workers. My hours were spent making motivational art to hang in my room, talking with my mom, and laughing with a dear friend. I needed a day like today…and I am so, so grateful that I had it.

But, you’re seeing this blog tonight because I won’t be able to do my usual Monday post tomorrow. Tomorrow, I will be in Interventional Radiology, receiving yet another cervical injection of chemotherapy. Then, after that injection, I will receive still more chemotherapy—also injections, but to my legs.

Am I scared? Yes. I am frightened all the way to my cancer-filled marrow. Cervical injections are risky, painful—in fact, I would rank them as being more painful than even bone marrow biopsies—but this is a necessary evil. This evil is going to save me.

It amazes me, in my more detached moments, that pain can heal. That it can burn away disease. That out of these ashes, something whole and healthy and capable of thriving underneath brilliant, blue skies can emerge.

It’s been a rough few days. Yesterday I had an echocardiogram, my power port was placed in my chest, and I had a bone marrow biopsy. I’ve also been receiving pain medications and steroids around the clock. I am tired. I am hungry. I want to go home.

But I can’t. I have work to do here—work that I am determined to accomplish with grace, with gratitude, with a smile whenever possible.

*Amazing Book Spoiler Alert*

Recently, a wonderful woman shared The Riddle-Master of Hed trilogy with me. In those books, the main character Morgan trusts the High One’s Harpist, Deth, who eventually betrays him to an evil wizard not once, but twice. Morgan is subsequently tortured, but during that time he learns from his torturers, gathering power, gathering strength until he finally breaks free. At first, Morgan seeks to destroy the harpist that nearly destroyed him. His plans change, though, and, in the end, Morgan discovers that the harpist was, in fact, the High One—the ruler of the land, the giver of peace, security. The High One had this message to Morgan: that he “betrayed” Morgan, he let those terrible things happen to him so that he’d be prepared, so that he would be strong, so that he would be ready to inherit the purpose that the High One had for him. The High One loved Morgan and those bad things that happened—he would have prevented them if there had been any other way to assist Morgan in his journey.

Now, I know that this book is fiction. I know that I am not Morgan and, please, let there be no comparisons made between Morgan’s torturers and the wonderful care team administering all of the procedures designed to save my life. The members of my care team are gentle, bighearted guides that I trust with my life. They are intent on seeing me through this.

No, the only similarity between my story and Morgan’s is that pain happens for a reason. I have to believe that there is a greater purpose at work here. I have to believe that what I am going through, even if it never helps me, will help someone else.

Dear Readers, you’re right to say that cancer sucks. You’re right to shout “fuck cancer” as loud and as long as you want. You can cry. You can sob. You can do whatever it is that will help you deal with this news because, truthfully, I’ve been doing the same thing (except maybe the yelling – no need to get bed restrained lol). Amid my tears, though, I am determined to see the positive. I am determined to count the blessings inherent in each day.

For instance, as I write this, there is warm sunshine pouring through my hospital room window. Right now, my back isn’t hurting as badly as what it was. Right now, I am sitting upright and doing what I love to do—write. I have to count my blessings when I can because gratitude is the key to strength, to getting through this.

As is your love.

Please keep the positive vibes, prayers and words of encouragement coming my way. They are air and food to me. They are nourishment. They fortify me. YOU are saving me from the emotional anguish of this disease and, for that, I will be eternally grateful.

The only thing I can offer is my love and the hope that all of this is happening for a reason—for a greater good.

The leukemia is back. It’s in my spinal cord, but localized in one spot. The news was revealed not by surgery as expected, but, instead, by a lumbar puncture (thankfully performed by Interventional Radiology) and a 3-hour long MRI. Tomorrow, I will have an echocardiogram, a power port implanted, a bone marrow biopsy, and my first dose of chemotherapy.

My doctors have never seen Acute Lymphoblastic Leukemia (ALL) manifest like this. They’re consulting bigger hospitals to discern just how to treat me. At the end of the day, though, the goal is to eradicate the leukemia cells and then have a bone marrow transplant.

I need prayers, Dear Readers.

I need love and light and healing vibes. I am relying on others—on you—to be my strength in those moments that I have none. This fight will be a long one. This fight is going to require guts and stubbornness. It’s a battle that I will need your help with. I will need your encouragement. Your words of kindness, of hope, of love.

I know some of the landmarks of this path, but in many ways, it is completely new journey to me. I would be lying if I said I wasn’t terrified. I would be lying if I said that I wasn’t hovering on the edge of being okay and complete hysteria.

BUT I plan on walking this path with grace.

I plan on cultivating gratitude and positive attitude as I go.

I fully intend to make the most of my time here, treating every day as the precious gift that it is. Even tomorrow, when I wake up in pain from the procedures, I will find something good to cling to. I will see the blessings in the day, even when my eyes are tear-filled.

Please, Dear Readers, keep my family and I in your prayers. Keep the good thoughts coming and I promise to do the same. This blog will continue to be a place of hope, of gratitude, of healing.

This will be the space that, every week (maybe not always on Mondays), where we can continue to meet.

We’ve had our littlest fur baby, Alderaan, for almost three weeks now. He continues to be a love bug, crawling into my lap and head-butting my chin whenever he wants to cuddle. He enjoys playing with his big brother, Wallace the Wonderful, and he absolutely adores his human daddy. But I’ve noticed something interesting about this bundle of light gray fur: he stands his ground.

What do I mean by that? Well, Dear Readers, each morning as I drink my coffee and continue laboring away on the most recent rewrite of my novel, Alderaan will climb onto the back of the couch, set his front paws on the windowsill, and stare out at the street. I suppose there’s nothing peculiar about that—most cats window watch—but what caught my attention is how much my little love bug trembles whenever people or dogs pass by. His whole body will shake with fear, but unlike Wallace who will run for cover (Mommy isn’t judging you for that, Wallace!), Alderaan stays his ground. He will not budge. He will not break eye contact. Alderaan endures this discomfort until it passes, only relaxing when the perceived threat on the other side of the window vanishes from his field of view.

This little cat’s courage astonishes me and it has made me question, can I do the same? Do I have the wherewithal to stare down the parts of my life that are scary and/or uncomfortable? Do I tremble and endure? Or do I tremble and run?

By most accounts, I live a good life. I have a roof over my head, food in my belly, and most importantly, I am loved. But I struggle with anxiety. I struggle with the weight of my cancer experience. I continue to struggle—every day—with the task of rebuilding my life. Most days, if I am being honest, I take Wallace’s approach and run for cover.

Example? The past two months, I have been in an inordinate amount of pain. It started with isolated hip pain and has progressed to include both legs. I am stiff, loosing flexibility, and, the way I ache—it reminds me too much of my stint in ICU and the pain of relearning how to walk. I’ve been pretty good about ignoring that similarity. I am, in fact, quite gifted at pushing ugly feelings and emotions down. But last night it came rushing out of me. Last night, despite medication, despite aromatherapy—I woke up sobbing, shaking. I couldn’t control it. I couldn’t make it stop.

It was Alderaan that came to the rescue. There was a purr rumbling in his throat and a reminder: these memories surface for a reason. Emotions pushed down for too long will inevitably come roaring up out of us. And we have a choice; to see them for all that they are or to run from them.

I am choosing to see them.

I am choosing to see the similarities in the past and the present and to remind myself that “now” is not “then”. That the situation is different. That I am different.

I wanted 2017 to be a year of growth—of building resiliency, of strength—and the Universe, through this inexplicable leg pain and the memories it is triggering, has presented me with that opportunity. I may tremble at what I see, Dear Readers, but I will not avert my eyes until I can look at my past without fear, without judgement, without reliving it.

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*Please note that the content of this blog is a reflection of the author's personal thoughts and experiences. It is not intended to serve as a self-help guide nor should it in any way, shape, or form replace professional mental health services. If you are in crisis, or in need of support, please reach out to a professional within your community.